Transcript Confidentiality in Adolescent Health Care: Research, Ethics, Law, and Policy Abigail English, JD Director Center for Adolescent Health & the Law Treuman Katz Center for.

Confidentiality in Adolescent Health Care:
Research, Ethics, Law, and Policy
Abigail English, JD
Director
Center for Adolescent Health & the Law
Treuman Katz Center for Pediatric Bioethics
Seattle Children’s Hospital
Seattle – July 25, 2009
Angela Roddey Holder
In honor of a brilliant scholar, a
tireless advocate to ensure justice
for the vulnerable, especially
women and adolescents, and a true
friend, who was greatly admired
and will be long remembered for
her many contributions to law and
bioethics.
Center for Adolescent Health & the Law
Overview
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Rationale & research findings
Ethical principles
Legal framework
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Federal law
State law
Professional policies
Continuing controversies
Center for Adolescent Health & the Law
First Principles
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Comprehensive services
Minors & adults
Positive family involvement
Lack of supportive families
Laws & adolescent access to care
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Parents and Adolescents
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Voluntary communication
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Mandated communication
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Supportive parents
Adolescent disclosure
Dysfunctional families
Adolescent autonomy
Interests of adolescents & parents
Center for Adolescent Health & the Law
Rationale for Confidentiality Protection
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Avoid negative health outcomes
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Protect health of adolescents
Protect public health
Encourage adolescents to seek
needed care
Supported by research findings
Center for Adolescent Health & the Law
Research Findings: Privacy Concerns
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Many adolescents have privacy
concerns
Adolescents are primarily concerned
about disclosure of information to
their parents related to sexual
behaviors, substance use, and
mental health
Center for Adolescent Health & the Law
Adolescents Have Privacy Concerns
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58% of 9th -12th grade students agree
with the following statement: “There are
some health concerns that I would not
want my parents to know about.”
(N=1295)
[Cheng et al. JAMA. 1993]
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Research Findings: Effect on Behavior
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Privacy concerns can influence:
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Whether adolescents seek care
When adolescents seek care
Where adolescents seek care
How openly adolescents talk with
physicians
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Privacy Concerns: Foregone Care
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Concerns about parental notification
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Consider not seeking care
Needing health care but not getting it
Add Health study: adolescents who
forego care at higher risk of health
problems
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Privacy Concerns: Choice of Provider
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Choice of family planning clinic
 “Don’t have to involve family”
 “Usual MD might send records
home”
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Privacy Concerns: Communication
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Greater assurance of confidentiality
Increased willingness to disclose
sensitive information
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Research Findings: Outcomes & Cost
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Likely influence of privacy concerns
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Reproductive health outcomes
Rates of sexually transmitted infections
Health outcomes are costly
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Privacy Concerns: Parental Knowledge
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Likely parental knowledge or
mandated notification
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Decreased willingness to be tested for
STD
Increased likelihood of stopping use of
all sexual health services
Increased likelihood of stopping use of
clinic
Minimal likelihood of stopping sexual
activity
Center for Adolescent Health & the Law
Privacy Concerns: Cost
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Texas study of projected costs due
to loss of confidentiality in publicly
funded clinics
Increased pregnancies, births,
abortions, and untreated STDs
Projected annual increased costs >
$43 million
Center for Adolescent Health & the Law
Ethical Principles
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Respect for autonomy
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Nonmaleficence
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Avoiding harm from disclosure
Beneficence
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Honoring adolescent’s privacy choices
Promoting candor & good clinical care
Justice
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Supporting access to care
Center for Adolescent Health & the Law
Professional Organization Policies: Themes
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Codes of ethics
Policy & position papers
Rationale for supporting
confidentiality
Informing adolescents and parents
about confidentiality protections and
limits to those rights
Center for Adolescent Health & the Law
Professional Organization Policies:
Services, Populations, & Settings
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Policies supporting confidential access to
specific health services, such as:
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Preventive health care
Testing & treatment for STDs & HIV
Contraception, pregnancy-related services,
abortion, & other reproductive health services
Concerns for specific populations of
adolescents
Confidentiality in particular health care
settings
Center for Adolescent Health & the Law
The Legal Framework
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Complex patchwork
State & federal law
Constitution, statutes, court
decisions
Reproductive rights
Family roles
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Status of minor children
Rights & responsibilities of parents
Center for Adolescent Health & the Law
Relationship of Consent & Confidentiality
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“Consent & confidentiality”
Confidentiality & disclosure in
consent laws
Linkage
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Clinical practice
Ethical guidelines
Professional policies
State & federal laws
Center for Adolescent Health & the Law
History of Minor Consent Laws
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Earliest laws enacted in 1950s
Expansion in 1960s & 1970s
Stability in 1980s
Attempts to limit in 1990s & beyond
Center for Adolescent Health & the Law
Minor Consent Laws in 50 States & DC
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Minor consent laws in all states
Minor’s status
Services minor is seeking
Treatment without consent
Center for Adolescent Health & the Law
Consent Laws Based on Status
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Emancipated minor
Married minor
Minor in the armed services
Mature minor
Minor living apart from parents
High school graduate
Minor over a certain age
Pregnant minor
Incarcerated minor
Center for Adolescent Health & the Law
Consent Laws Based on Services (1)
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“Pregnancy related care”
Minors usually may consent
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Contraceptive services
Prenatal & maternity care
Minors often may not consent
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Sterilization
Abortion
Center for Adolescent Health & the Law
Consent Laws Based on Services (2)
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STD/VD prevention, diagnosis, &
treatment
Reportable disease prevention, diagnosis,
& treatment
HIV/AIDS testing & treatment
Drug or alcohol counseling & treatment
Outpatient mental health services
Diagnosis & treatment for sexual assault
Center for Adolescent Health & the Law
State Confidentiality Laws
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State constitutional right of privacy
Minor consent
Medical confidentiality & medical
records
Patient access to health records
Professional licensing
Evidentiary privileges
State funding programs
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Federal Confidentiality Laws
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Federal constitutional right of privacy
Federal funding programs
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Title X
Medicaid
Regulations for federal drug & alcohol
programs
HIPAA Privacy Rule
Importance of state laws in application of
federal laws
Center for Adolescent Health & the Law
HIPAA Privacy Rule:
Minors as Individuals (1)
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Minors are treated as “individuals” under
HIPAA Privacy Rule in 3 circumstances:
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Minor has the right to consent and has
consented; or
Minor may obtain care without parental
consent and the minor, a court, or someone
else has consented; or
Parents accede to confidentiality agreement
between minor and health care provider
Center for Adolescent Health & the Law
HIPAA Privacy Rule:
Minors as Individuals (2)
 Minor
acting as “the individual”
can exercise rights re
“protected health information”
 Right of the individual
Access to information
 Control over disclosure
 Request privacy protection
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Center for Adolescent Health & the Law
HIPAA Privacy Rule:
Disclosure to Parents
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If state or other law requires it,
provider must disclose
If state or other law prohibits it,
provider may not disclose
If state or other law permits it,
provider has discretion to disclose
If state or other law is silent or
unclear, provider has discretion to
grant or withhold access
Center for Adolescent Health & the Law
Confidentiality Protections:
State Minor Consent Laws
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Explicit protection of confidentiality
in minor consent laws
Reference to minor consent laws in
other statutes
Grant of discretion to physician or
health care professional to disclose
information
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Laws Mandating Disclosure
 Parental
notification/consent
provisions
 Child abuse reporting statutes
 Disclosure requirements when
minor is dangerous to self or
others
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Recent Efforts to Repeal or Restrict
Consent & Confidentiality for Minors
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Parents’ rights laws
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Proposed constitutional amendments
Proposed federal & state statutes
Outright repeal of all minor consent
provisions
Partial repeal of some minor consent
provisions
Limitations of confidentiality
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Parental notification provisions
Parental access to records
Direct requirements in federal or state statutes
Appropriations riders
Center for Adolescent Health & the Law
Future Policy Implications
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All adolescents should have access to
comprehensive health care
Confidentiality, and the ability to give
independent consent, can be important
elements of that access
Protecting consent & confidentiality for
adolescents is not inconsistent with
helping them communicate with parents
& other adults
Current laws provide strong protections
but are at risk
Center for Adolescent Health & the Law
“Confidential Care” vs. “No Care”
“When a teenager needs help,
confidential health care
is better than no health care at
all.”
Conclusion
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Research findings and current
professional & legal guidelines
support parental involvement, but
also support the availability of
confidential adolescent health care
for some adolescents & for specific
sensitive health problems
Center for Adolescent Health & the Law